Cancer selfie-awareness

I have to write about this, following some discussions.

I’ll start by saying that I obviously don’t have a problem with the concept of fundraising for cancer charities (having researched in a few places, now working at one and, y’know, being a human being). I’m not saying everyone who did it has missed the point, or shouldn’t have participated. I find the subject interesting; personally and professionally.

The questions I want to raise are generally more academic:

What is awareness? How effective are these campaigns/memes? What are the negatives, and do they matter?

What’s it about?

Some people woke up to find their Facebook feeds full of selfies – moreso than usual. I have to say I didn’t, rather my feed was peppered with criticisms of this mysterious selfie overload, mostly of women not wearing make-up and being proud of that. Apparently it is a big deal for some.

Under some posts came the clarification that the photo was “for cancer awareness”. Maybe they’d include a donation link/number to text to encourage people to give money to a relevant cause. Maybe they’d specify a charity. Lots of people seem to think it’s about breast cancer, although I find that odd, given it does not tend to manifest on one’s face.

According to this article (which I dislike mainly for its use of Facebook photos without stating that they sought permission), the idea took flight last year:

in September 2013… Escensual.com launched the nationwide DareToBare campaign for women across the UK to raise money and awareness for Breast Cancer Care. The campaign aimed to persuade women of all ages and walks of life to get sponsored to go to work, social activities or even a night out without their make-up on.

What motivated the company to do so is another question – as they sell cosmetics, focusing on their own product would make sense. It’s for a good cause. But between then and now something happened and it’s resurrected itself as #nomakeupselfie, flooding twitter and facebook with barefaced ladies (and some men getting their slap on, or posing bare-chested – men can get breast cancer, too – or people sharing images with basic self-check instructions, again usually for the breasts).

A friend wrote this post to mull over his feelings about it. I commented to link to a video about skin cancer that I saw on twitter that I thought was well-done.

I think it’s important to remember this wasn’t started by a charity. If it were, I’d be far more critical. I suppose because it wasn’t, that has led some to criticise individuals quite harshly – I wouldn’t advocate that. People are well-intentioned and the donations have come in at over £1m for Cancer Research UK alone now.

Cancer ‘Awareness’


by Alice Sheppard

“Look, I raised it!” – Image by Alice Sheppard (who does donate, calm down)

Awareness is one of those current buzzwords, no one seems to be sure what it means. Certainly when I think about it and try to pin it down, I’m not sure either.

Are you aware of cancer?

I believe just about everyone is these days. However, what do you mean by “aware of”? Or by “cancer”? There are many things to consider:

- How to be self-aware; what to keep in mind about your body, to see a doctor if anything unusual happens.
- To take up screening invitations (cervical, breast, prostate, bowel etc). The earlier cancer is detected, the more likely treatment will be successful.
- How survival has improved over the last 60 years for all cancer types (jump to Figure 1.5).
- Some cancers are still very hard to treat and require more funding – including pancreas, brain, lung, oesophagus.
- Some cancers are now cured* often (mainly testicular cancer, some forms of skin cancer and now breast & prostate cancer, Hodgkin lymphoma). *In cancer talk by cured, we usually mean “disease-free survival for at least 5 or 10 years”.
- Why does cancer seem more common? We live longer now, we’re also fatter and more alcoholic, but it’s always been with us, and it’s not an exclusively human disease – most animals and some plants get it, too. Even dinosaurs did.
- What is cancer?

Cancer is hundreds of diseases. We have more than 200 types of cells and more than 70 organs, and even when looking at a specific one, like the breast for example, there are many “sub-types” of cancer in that location that are quite different and will require different kinds of treatment. It will take much more research to understand all of these diseases. While they have some things in common – cells growing out of control – they have important differences. That’s why we need new drugs and more basic research into cancer biology.

Sometimes awareness is very important. Breast cancer research and treatment may not be where it is now without the dedicated campaigns we’ve seen. Hard-to-spot and unusual symptoms and risky behaviours can be spotted/avoided more easily with clear education.

For example, HIV/AIDS became a serious public health issue in the UK in the eighties but public health campaigns hammered home the important messages about safe sex and drug use, and it had measurable positive effects, on other STIs too. But you do have to specify what you want people to be aware of, and that seems to be lacking in this case.

Some questions


There are a lot of valid, important and interesting questions the campaign could raise. But, as far as I can see, it hasn’t really. So here we are. However, a simple, engaging campaign cannot take the place of a comprehensive education on a very complicated subject, and it never will. If it inspires people to learn more then that’s great. Here are a few things worth thinking about, if you are interested.

Screening


This is a complex topic that I can’t cover fully here but worth mentioning (follow Margaret McCartney‘s work for more). Screening has likely saved many lives – by detecting their cancers earlier, people can seek appropriate treatment, which will probably be less severe than if they wait and present at a late, advanced stage where their cancer may have spread (metastasised) and be uncurable or even without proven treatment options. Even then, there are clinical trials people can sign up to – oncologists should help people who wish to do so.

There are also valid questions about the potential harms of screening. Something that complicates cancer diagnoses is that we generally don’t know which pre-cancerous growths (for example, considering prostate or breast) will progress in someone’s lifetime become a serious and potentially deadly cancer, and which won’t. A favoured metaphor would be “how to separate the tigers from the pussy cats“. There is plenty of research into finding markers, indicators on cancer cells, that could tell us which patients we need to treat straight away, and who could just be monitored over time because they’re unlikely to progress.

The danger with treating everyone the same, whenever you find something suspect, is one of over-treatment.  Diagnoses are extremely stressful. Cancer treatment is generally unpleasant. Not something you want if you can avoid it. So explaining risks to people, and what options they have, is a priority. Ultimately, it should be the patient’s choice if they wish, for example, to opt for surgery to mitigate their risk, or to wait and have regular tests. Many factors can affect our cancer risk; our genes, lifestyle, environment – it’s hard to say for sure what will happen when we still don’t fully understand this complex set of diseases. Long story short; do attend your appointments/take the tests when they arrive!

Focusing on women


Once again this appears to be using the worn-out idea that women’s appearances are very important and essentially public property. There are a number of issues around making a big deal out of not wearing make-up:

Loads of women don’t; why should those who do be considered “brave” to lose it for a photo, particularly in the context of cancer and all it entails; the whole exercise seems to shift the focus from something important to something relatively trivial; women are being told that they “look better” without (usually by men; suggesting how we appear to men is something important to be considered) or are self-deprecating saying they must look like zombies – this reinforces harmful ideas that women are out on public display, mainly for the “male gaze“, and should act accordingly, and that make-up (or lack of) is necessary to look “acceptable”.

A friend shared a lovely comment she saw on a post:

“Isn’t it ironic that below every “no make up selfie” there are comments saying “looking beautiful hun xx”. No they do not. Stop lying”

While not everyone tends to see the world through feminist lenses, these are valid issues that should be considered in the context of such a campaign. Women (teenagers in particular) are pressured to look a certain way, to buy and wear a lot of make-up; the whole thing can be wrapped up in insecurity. The demands placed on women of all ages by media and society are very real and need to be addressed.

Finally, all of the above ignores that fact that many women will wear whatever make-up they choose to simply because they enjoy it. As it should be. It’s nothing to do with what other people think – you can style your own face, not other people’s. Again, all having very little to do with cancer or awareness of it whatsoever. If someone has an explanation as to why the “dare to bare” idea is relevant and useful, do add in the comments.

Men have participated too because yes, men can get breast cancer (but the lifetime risk of developing breast cancer is 1 in 8 for women and 1 in 868 for men: stats) and of course many other cancers. Some are putting on make-up for a laugh or, apparently, going bare-chested but I’ve yet to see evidence of this. I have seen first-hand the “you look better without it, ladies!” type comments, though, which remind me of “smile, love!” and make me very angry. Men may well be fed up of being excluded from cancer fundraising drives, but in fact I’m told male-focussed ones have been tried – the problem is participation.

Other unofficial campaigns have had more sinister ulterior motives. One, encouraging women to go bra-less, seemed to have been created by a sleazy individual (or a few), with very little thought for the realities of breast cancer patients’ lives and perpetuating tolerance of assault. Some are purely useless and really are just silly vanity projects, like those that encourage women to post colours that describe their underwear, with no added explanation; educating nobody.

Edit: a friend of a friend of a friend (yes, the internet) has posted her selfie, and it actually is brave. To raise awareness of the fact that violence against women is far more common and accepted than most people like to think, she has posted the image of her bruised face – she was beaten for telling a guy in a club not to touch her without her permission, and told to “smile” with it. She’s raised >£1k for Oxford Sexual Abuse & Rape Crisis Centre. Good going.

Edit II: The Vagenda have a good post exploring this point further.

Family and friends


Another problem can be that this tactic can negatively affect patients and families. A huge influx of these images, which might remind people of loved ones lost, or that they personally wear make-up to paint on eyebrows lost to chemotherapy. There are some angry responses to be found.

Of course, it’s likely that anything tackling a tough subject will upset and offend some people. That doesn’t mean it’s automatically wrong, but it is important to be considerate – again this would be more pertinent if a charity were responsible. For example, a recent campaign by Pancreatic Cancer Action featured a young woman, Kerry, who wished to draw attention to the consistently poor survival rate and treatment options for pancreatic cancer by explain that she would wish she had breast cancer.

I thought this campaign was very well done. It made people stop and look, it made them question, and quickly provided answers. It educated people about the need for more research into pancreatic cancer, and better diagnostic techniques (it’s so hard to treat because it’s detected so late; being inside the body, it can become very advanced before any serious symptoms occur and then it’s too late – in this case awareness of the symptoms really can save lives).

But people also hated this campaign and vociferously complained. I had a long chat with a metastatic breast cancer patient on twitter who really didn’t like it because they felt it trivialised the difficulties of metBC patients. I didn’t see it that way, but encouraged her to let the charity know. While they received many complaints, the campaign also seems to have met some of its aims and they are following up with more ads.

What was really awful was that people abused Kerry personally, sending her horrible messages and berating her decision to be part of the campaign (PCA contacted patient groups for guidance before running it). She died in February - and I still wonder what the people who sent her those words were thinking, and what they feel now.

I’ve lost family and friends to cancer, most people have. My personal questions about these campaigns don’t tend to stem from that, but it is always worth considering what a range of people are likely to feel, and to be confident that potential benefits outweigh the harms.

Does it work?


I’ve already linked above showing that CRUK has seen a spike in donations, as have some other breast/pancreas or other specific focus charities. However, there’s more to consider here.

Some have said most of the selfies they saw, beginning about 5 days ago, had no links or explanation whatsoever to accompany them. It was only after the criticisms began – focusing on those who failed to add relevant links or information as being lazy or purely narcissistic (well, most people are a bit) – that the donations and nominations and relevant links started to appear. So perhaps it wasn’t the campaign itself, but people’s irritation that it wasn’t working, that really made the difference… can we ever tell? Cancer charities like CRUK and PCA guiding people, creating some purpose and direction also helped.

One problem with uncoordinated campaigns is that their results can be difficult to keep track of. Without knowing what effect you’ve had, you can’t say whether something was successful and you can’t design better endeavours in the future. I hope to return to this idea in a post about a cancer charity linking with a well-known tabloid soon; link here when it’s done.

Will it have any lasting effect or will things go back to normal, or worse: below it, after the spike? How many people have donated for the first time? Will they continue? Has anyone learned about self-checks and will they do more after seeing friends participate in this? Have people posted photos in lieu of doing something genuinely useful (like people who say I’ll pray for you then do nothing of actual substance…)?

That last point is what drew the real criticism. If you don’t have a purpose besides showing people your face, you haven’t achieved anything. Even adding a link or naming a cancer type would help more than that.

Doing something


PrintA friend asked about doing something together to raise a bit of money. After talking I realised I am actually doing this year’s Thames Path Challenge in September with work (my leg is dodgy so I don’t run on it, before you ask…). So she will donate some money for that – all our fundraising efforts go to funding lab projects – and will be doing the Colour Run.

Charities

Don’t forget about other types of charity that support cancer patients and their families. Hospices need donations and volunteers. Marie Curie Cancer Care and Macmillan Cancer Support nurses provide invaluable support at the most stressful times and they are spread so thin. CLIC Sergeant and the Teenage Cancer Trust support younger sufferers and their families. Cancer-Research-UK_482There are many charities that focus on specific cancer types – you might choose to support one of these if you have been personally affected.

Many of them have charity shops so if you need to buy stuff you can donate at the same time! This is still my preferred route.

Otherwise, Cancer Research UK supports hundreds of excellent researchers across the country, who run labs dedicated to furthering our understanding of cancer biology, designing new drugs and surgical techniques, testing new treatments and running clinical trials, and helping to educate the public about cancer.

It’s very difficult to be fully “aware” of cancer, even when it’s staring you in the face, quite literally, as someone you love loses their life to it. It’s a huge thing, the Big C – but donations are important, wherever they come from.

As well as the donations, people are talking and hopefully learning – that’s definitely a plus.

Harpal

Edits:

Left: Nicked From Kat (centre). Right: Dr Harpal Kumar, CRUK chief exec (via @CR_UK)

More Links

CRUK answers FAQs about #nomakeupselfie

- Andrew Steele, creator of the Scienceogram, discusses the phenomenon in relation to the wider science funding landscape for The Conversation.

11 Responses to “Cancer selfie-awareness”

  1. Tannice Says:

    I think the people who think posting a no make up selfie are probably the people who might need a pick me up ego boost. Women have been trained to believe they can’t go without. I went without today at a conference and felt a little self conscious even though I quite often go without makeup. My mother feels she can’t go without makeup. She is literally trapped in the house by this belief. I went around and posted the text number for CRUK on the selfies I saw without it. To me it’s not brave to not wear makeup but to some women it is. If it boosts their ego and makes them see that their friends love them without foundation and eyeliner, then I have no issue with that. Nothing wrong with a little bit of narcissm here and there. After all, almost all selfies are born of it!

    • noodlemaz Says:

      I get that, and yes it’s fine to fish for compliments when you feel like you need them – we all do sometimes.
      However, I think that’s also why some people were critical.

      Using “I’m raising money for cancer!” as an excuse to get some compliments? At least if one just posts a picture, that’s its only purpose, it’s fairly clear. Adding “I’m doing a thing!” can be seen in two ways – making the most of the reach of a post, or burying insecurity and need for approval by hanging it on wider efforts to address something very serious and hurtful to a great many people. I think sometimes that seems unpleasant, because it’s using other people’s suffering to prop oneself up, in a way.

      Why a picture of one’s own (generally cancer-free) face? Why not an object or image that means something to the person, in relation to the cause? It’s probably fair to say it is the narcissism of social media at play. And while ultimately good things are coming of it in this case, as I said, it’s not because of the narcissism, it’s because people have added direction to it with complaints and suggestions. I’ve seen some amazing ones, double mastectomy survivors for example. So that’s cool. But I can see why people might have found it distasteful to begin with.

  2. Andy Says:

    The worst one of these I have seen was a viral facebook fake pregnancy announcement status to raise awareness for breast cancer. So completely insulting to all the women rendered infertile by some cancer treatments.

    • noodlemaz Says:

      Thanks Andy – indeed it was similar for the no-bra calls; breast cancer immediately raises the question of whether you will lose one or both of your breasts, so going around telling women “boobs are great, save the boobs, feel the boobs, let’s look at the boobs!!!11!” is incredibly insensitive. More on that later, though…

  3. Joe Dunckley Says:

    “Men may well be fed up of being excluded from cancer fundraising drives, but in fact I’m told male-focussed ones have been tried – the problem is participation.”

    I understand there may be one they could participate in each november. Something to do with growing facial hair. Which I guess makes it another one that seems to be disguising some desire to try out a different look behind a banterish bit of fund/awareness raising.

    • noodlemaz Says:

      Yes I was just saying last night I’ll probably do a Movember-critique later in the year, drawing on what others have done.
      Again, money raised isn’t a bad thing. But that doesn’t mean we can’t do it better, and can’t criticise the crap bits.

      I was thinking more of the fun-runs and things – apparently these were tried, but the almost total lack of interest shows that it seems it’s more about men who want to complain about women-only things, but don’t really want/need men only things when they are actually offered.

      Cf all the “WHEN IS INTERNATIONAL MENZ DAY” people who, once told (or even, in possession of google 24/7 360), will do fuckall on November 19th anyway.

  4. About Face: The #NoMakeUpSelfie and Digital Fundraising | Not That But This Says:

    […] to play their part in curing cancer but what does that mean in real terms? Dr. Marianne wrote a nice post looking at the fact that ‘cancer is hundreds of diseases’ and education on cancer […]

  5. 16 things you didn’t know about breast cancer | herrkrishna Says:

    […] On social media sites, women have been posting ‘no make up selfies’ to promote breast cancer awareness. A lot of people have been complaining about our image-obsessed society, the fact that not wearing make up is seen as a challenge for some, and that we hate selfies. Other people have already discussed this, such as the matteroffacts blog which looked at the social effect of make up, or noodlemaz who discusses the issue of ‘raising awareness‘. […]

  6. sara perkins (@saraperks) Says:

    I think you have to consider the nature of the media, The majority of fb time is via mobile phone so I have read.. Its a quick browse thing. I have doubts that vast amounts or even moderate amounts of advertising such as the pancreatic cancer ad you showed (my uncle died of that so I really get it) will work. Its shocking and unpleasant and quickly scrolled past. As an example my colleague at work has her cousin charting her two year fight with melanoma on fb . My colleague cannot bear to look at the pictures, she loves her dearly but removes those feeds as they happen.
    I think the selfie campaign was relevant to the media used. I think folks are forgetting that it wasn’t originally organised by charities though they picked up on it in a matter of hours and published donation text numbers. You have a nomination or you see someone else’s and you take a snap post and donate. done and dusted as fast as that and I believe the ease is the success not the individual’s need for social approval,or the deep implications of appearances in our society. It was just so easy to do. Many psychologists agree everyone needs a pay off for an altruistic action, The pay off may be very visible or it may be deeply subconscious but it is always there. People. will give more easily if they are happy and involved, this campaign did both.
    As for awareness, my awareness of the fund raising was increased easily thirty fold in two days. Awareness of the diseases caused is another matter and I can’t see that its suited to fb in the same way as the pics for donation and brand name awareness. Hopefully no one is suggesting viral home spun views on cancer diagnosis is appropriate!
    I think its been an amazing movement and it would be refreshing if people could actually celebrate the good in others and refrain from judging. So what if folks are vain (and I believe everyone is concerned about their looks at some level) knocking them for giving and spreading the word isn’t helpful. Judging them publicly as narcissistic isn’t kind or even very clever, I’m pretty sure we don’t need pundits on line and in the press to identify those individuals for us.
    Forty yeas ago when I was a child people wouldn’t even mention the word cancer let alone discuss it or have any idea what it looked like. Charities have worked hard over the years to improve that and it would be a shame to do anything to set these good causes back.

    • noodlemaz Says:

      Hi Sara, sorry for the slow reply.

      The nature of the media is an interesting part of it, definitely. It’s worth remembering that while a high percentage of (especially younger) people do consume media mostly through their mobile internet, not everyone does – especially some of the target demographics (e.g. breast cancer mostly affects post-menopausal women). So while it’s certainly a valid point that the speed, ease, and social media compatibility of tactics are undoubtedly a factor, it’s not the only thing worth considering.

      What is shocking and unpleasant to some is another’s saving grace. For every person who says “oh those nasty photos on cigarette packets don’t put me off at all”, there’s a handful who were encouraged to quit, and some young people who never even started because of that educational power.

      I’ve made very clear here some other things you’ve pointed out, like:
      - no, it wasn’t organised by the charities
      - fundraising for good causes is a positive thing
      - people are generally vain/narcissistic and that’s not the end of the world by any means.

      I don’t think any of this discussion in any ways “sets good causes back” – I’ve tried to add to the “awareness raising” of, as you said, the fundraising to expand further on the disease itself, the work of charities, the gaps that still need filling both in understanding and fundraising itself.

      People shouldn’t be complacent and think that hiding behind “it’s for charity!” is an excuse to do negative things – not so appropriate in this case, but in some others I hope to cover in future. Criticism, where valid, fair, measured and accompanied by useful information, is not in itself a bad thing. If you do have a specific problem with something written here, please let me know and I will do my best to address it.

      As many people have said, it took a while for people to actually start adding the useful information. At first it literally was selfie-posting with nothing but a post-hoc “for charity!” justification. It is the criticism itself that has made the self-obsession of social media useful in this way, in this case. That is pretty amazing, and something fascinating to study in detail (for some, particularly those who benefit from this stuff – which in terms of cancer is, ultimately, everyone but some people have trouble identifying with that, somewhat understandably).

      Donating hasn’t been made any easier by this – text-to-donate numbers have been around for a while. So I think the vanity element is more important than you say, but that’s largely down to opinion here.

      Again, as I asid in the post, I’m not saying it’s a bad thing. I just think it’s worth looking at more closely.


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